Neurologist for "visual snow syndrome"

I can't help with neurologist recommendations, but the condition is something I have experienced beginning decades ago when I would suddenly see through a static.  I could see print on the page, but I couldn't process it.  The doctor I consulted told me that this was an aura associated with migraines, which ends after a chemical is released in the body (about 20 minute duration).  This helped me be calm until it passed.  At this point in my life, I did not experience the migraine headaches.  For me, the onset of the aura is triggered by looking into bright light, moving from a low light environment into bright light, flashing lights, rapid extreme light changes in movies.  I went for years without having problems, but now that I am a grandmother in my 70s, my eyes are more sensitive, I am experiencing this and headaches.  I have my computer glasses treated to block blue light.  I have to wear a visor when indoor light is too bright, never sit facing a window where light is substantial, and wear a protective hat and sunlight when in bright sun.  My sister-in-law also have this issue.  I appreciate learning from you that this is a recognizable condition.  I hope you find a helpful neurologist.

Not specific to this condition, but when I have a medical needthat needs specialty, especially if little known, I usually go to UCSF.

Hello! I am a professor at the Berkeley School of Optometry and just wanted to give you a couple of resources as you go through this journey of visual snow. First, there is a support group website: https://www.visualsnowinitiative.org/ that you might find helpful. Visual snow is a diagnosis of exclusion, so I am glad that you are seeking the care of a neurologist. When looking at medicinal interventions, the literature generally agrees that they are of little help. Sometimes spectacle tints can be helpful to some people and there has been recent work looking at muscle imbalances of the eye that may make visual snow worse. However, visual snow is not, I should stress, and eyeball problem. Rather it is a brain issue. It is largely harmless although it can be quite annoying to those suffering from it. We know that people who have visual snow often suffer from migraines and tinnitus as well. Anyway, this webpage can help you make connections and hear the latest theories. Be well!

I agree with a previous poster that for rare conditions, I would go to Stanford or UCSF. If my family’s experience is any help to you, my mom has seen two neurologists at Stanford that absolutely saved her life when she suddenly got an incredibly rare autoimmune disease. We were told by one of her other doctors that anyone in the department would be fine. It was extremely difficult for us to get her an appointment. We had to call every day to see if there was a cancellation, and then drop everything when there was one. It was worth it - several doctors at other hospitals missed the problem entirely. The neurologist providing her follow up care is Dr May Han and she is excellent. https://stanfordhealthcare.org/doctors/h/may-han.html